grace (ge) gilbert
When my grandfather passed away from the usual thing, a heart attack, I was six and pretended I could speak to the dead.
“Momma misses you,” I whispered into my wet, wrinkled palm in the shower. “She loves you a lot.” This was the first of many “powers” I learned in order to cope with the sudden-ness of the body, to regain some control over expiry.
Years later, when my aunt Susan finally submits to her illness, early-February, it’s the unusual thing. Mold in the lungs. I am eighteen and leave university to attend her funeral, hung-over from a mixture of shock and chardonnay.
The night before the service, our family collects in her living room, framed with conspicuously out-of-season flower bouquets marked by curt “I’m sorry” cards. In an opaque fog of cigar smoke, we pass around bottles of bitter wine sent to us from Japan and finger through albums of her childhood.
In one yellowed photograph, she poses among the tulips in her backyard garden, vibrant and flushed, an image of health. Another picture, her arm is draped around my mother, who is a head taller but just as bony and frizzy-haired. Picture after picture, her body proves capable of handling itself. Everything intact, naïve, agile.
After a dozen stacks begin to form between the tufts of blue carpet, I settle on one in particular. Susan holds my frizzy-haired toddler head in her palms, eyes laughing into mine, both vast and moon-shaped.
After midnight or so, a dozen wine-glazed glasses coalescing in the kitchen sink, my mother helps my stumbling, lilted body into the bathtub and turns on the faucet.
Spine curled over my knees, I take a wet, wrinkled palm and breath into it, not as much in an effort to communicate this time as to reassure, to prevent floating away.
I’m still here, I whisper.
Intact, naïve, agile, and strangely whole.
Susan is twelve when her hands began to ache, to catch & snag at the joints.
I imagine her walking down to the general store with my mother, passing her father at the only bar in town. They carry crumpled dollar bills and purchase popsicles and warm pop. Back at home, Susan’s brother kicks a soccer ball through a patch of daisies, then Scotch tapes the stalks back together before his mother notices. A dog runs through a yard. A child falls & skins her knee before hopping back on the scooter.
Being diagnosed with rheumatoid arthritis as a pre-teen is rare, but I imagine the normalcy of life at the first symptom, the first flare. This is how things go, isn’t it? A suburban scene. Some seventies hit playing on a radio. Two young girls in terrycloth shorts, lips reddened with cold sugar.
A clue of disease hidden in the hands.
Last week, in my dimly lit basement apartment, right before bed, I stumble across a cockroach writhing on its back; its brown body leaving an oblong imprint in the dust between my bedposts.
“Where there’s one, there’s a guaranteed thousand hiding nearby,” a friend says the next day over coffee. We both shudder instinctively, then laugh.
I imagine this is how it is enter illness.
One by one, a thing is forced out of hiding.
The Latin, immunis, means free, exempt, unburdened by. It’s when you add qualifiers that the burdens come into question.
Immunodeficiency is actually the opposite of autoimmunity, Dr. Sgro tells me in response.
I am not sure whether it’s shame or guilt I feel when I realize I hadn’t known the difference, what was truly happening in Susan’s body all those years. I suppose I hadn’t been prepared for a practicing doctor to explain it to me in the dusty corner of a well-worn Starbucks, but as he clarified, I curled my sweater sleeves over my fingers and tried to focus solely on the biology.
To be autoimmune means to have such an active immune system that it ruins itself. To be immunodeficient means the body lacks immunity altogether: antibodies unequipped, unfit, or absent.
A significant amount of individuals with an underlying immunodeficiency, however, also carry a seemingly random bundle of autoimmune disorders— lupus, rheumatoid arthritis, multiple sclerosis, psoriasis, type one diabetes, carpal tunnel, on goes the list.
It’s a paradoxical relationship. The term “primary immunodeficiency” is used to claim disjunction within the body, another way to say “this body operates as a burden to itself” or “this body is first and foremost deficient of freedom.” With the body operating under the assumption of lack, there comes a chaos that bubbles onto the surface.
The aches, the snags, the sores.
It’s no wonder why the average patient with common variable immunodeficiency, Susan included, is diagnosed well within their third or fourth decade of life, oftentimes when it is much too late.
With such a wide spectrum of presentation, there are so many small and obvious burdens to look after first.
I attempted to read everything I could about Lupus, both in an effort to understand something that seemed nearly invisible during the best times, and, admittedly, to check my body constantly during the worst times, just in case I had inherited some of our family’s dysfunctional genes.
While running our usual errands together, one Fall afternoon, my mother told me that in their twenties, she used to joke with Susan about her ‘bad luck.’ From carpal tunnel to ovarian cysts to pancreatitis, along with the pesky and peculiarly early arthritis diagnosis, Susan had collected a slew of seemingly unrelated illnesses before the age of thirty.
She was like walking flypaper.
The jokes abruptly stopped, however, when Susan’s thirties brought frequent and severe lung infections, serious enough that she was considered for a lung transplant, and gastrointestinal infections that left Susan both incontinent and incapacitated, and sometimes in need of a wheelchair.
At this point, doctors were perplexed. Susan was presumed for over a decade after the lung transplant scare to have a uniquely severe & progressive case of Lupus, a relatively common autoimmune disorder, for which she was treated with weekly steroids, injected through a catheter port implanted above her left breast.
As a child, reading excessively about unpredictable disease is much more palatable than witnessing it peek through the cracks of the body. The first time I walked in on Susan injecting her steroids, I was nine and felt two things in rapid succession: terror, then guilt.
On certain weekends, my mother drove my sisters and I up to Susan’s country house, tucked neatly into the folds of Northern New York—far enough North that we would breath into our palms and watch it filter through our fingers, a way to distract from the task of shuffle-stepping down the steep, ice-glazed driveway with awkwardly bulky duffel bags and backpacks in tow.
Though the drive was cold, and often plagued with scores of small wildlife, we loved the weekends in the North. Given that we were so young, I suppose it was a joint custody of sorts. Susan was my mom’s first cousin, or “chosen sister” as they liked to call it, but I decided to simplify and call her “aunt,” or, more affectionately, “queen of freaks, once-removed.”
Susan was our closest relative geographically, and became a mother to us because it was the human thing to do. Our father had swiftly divorced my mother, become a local politician, and resettled across town with his new family. Susan’s father was jailed for tax fraud and then attempted sobriety, only to drink a jug of antifreeze before leaving his entire inheritance to a waitress at the local Texas Roadhouse, where he dined almost every day.
Plus, Susan had never married, never had children. “It’s just not compatible with my lifestyle,” she said once, and she was right. A family court lawyer, Susan was known for her fierce advocacy and her impressive collection of six-inch heels. She managed a private firm, helped engineer and build a public playground, and ran as a Democrat in upstate New York (it’s own kind of bravery) for family court judge. My sister wrote a speech for her to give on local television, announcing her candidacy for office, and we later watched the coverage together, beaming, as Susan organized her dozens of pills into their weekly containers.
But there was still something innately maternal, something warm and open she reserved for us. When we’d enter the house through the kitchen, there would always be wax paper lining every surface, sticky clots of chocolate chip cookie fighting for space. The pantry would be stocked full with our favorite snacks (ones Susan was unable to eat due to the sores in her mouth), the television on and loaded with Disney shows and romantic comedies.
Illness was, to our relief, always beneath the skin: out of sight, out of mind.
One particular Sunday morning, however, on my way to the bathroom, I ambled sleepily past [ ]’s bedroom, noticed her door had been left slightly ajar, a slight dripping noise audible through the opening. I paused for a moment, curious as to the origin of the sound, and peered through.
Susan was topless, her sleep shirt folded down below her bruised and gray-hued breasts, a tube running from the top of an IV pole all the way through a gaping port in her chest.
Pumping, priming, dripping.
I immediately placed a hand over my mouth as I turned toward the bathroom, the medicinal, acidic stench still poking through my fingers into my nostrils as I closed the door behind me.
It was only through these small lapses that I became aware of the façade, as if when I would finally discover even a mere trace of illness, the cookies and gourmet snacks and luxury bath bombs would tear open and release a swell of vermin.
The word body once came from the German word boteh: a trunk, a corpse.
It also had associations with the Latin corpus, originally meaning “wood of a tree.”
Oftentimes, when a tree perishes & begins its own necessary process of decay, the outer bark is preserved—the remains found intact while the innards, the pulp of it, have long rotted away.
To think of the body as such, the symbol of nature, the life-giver, the origin of breath— who has the ability to know what is terminal? Who can see past the health, the sturdy bark, and notice the thing has already died?
The first time I witness a “symptom” bubbling to my surface, I am sixteen and training to win the top mile spot in the sectional indoor track championships.
Susan is in the hospital after going septic, this one born from a relatively minor gastrointestinal infection.
At this point, Susan’s treatments seem to prune rather than uproot. Bag Balm for the unbearable joint pain and swelling. Steroids to maintain strength. Xanax to take the edge off. There seems to be no salve for the scars making a new topography of Susan’s lungs, for the snarled miasma of her intestinal tract.
My mother, more and more frequently, shuttles herself up North, often driving on the treacherous blustery highway long into the night. One day here, one day there. My sisters and I stay behind when things seem grave.
“You’ll see her when she’s well,” my mother says while hustling out the front door.
Despite the hospital scare, I attempt to focus my energy away from Susan and into running. The indoor track facility is owned by the local university, as our high school is too budget-aware to invest in a seemingly off-hand sport. It’s almost a privilege to represent my teammates in this way. While they run circles around the hard granite hallways of our school, measuring their splits in the number of blue lockers they graze with their fingertips, I lace up my neon green spikes and slide smoothly across masses of soft turf, passing anyone I can on my way to conquest.
As a rather lethargic teenager, running is not pleasurable, but when I win, it’s a release of something. At every curve, my limbs grow a bit number, my arms almost unattached from my body. To not feel anything but a burn in a body, to channel pain into success, feels like a different kind of control.
Rather than checking my armpits for swollen lymph nodes or closely monitoring the redness on my cheeks for the classic presentations of an autoimmune rash, I am allowed and encouraged, for once, to give into a body’s destruction.
One particular Thursday, as my coach watches, I feel an unfamiliar flutter in my chest. Then, a pain in the arm. A breathlessness.
“Coach,” I say with a frightened gasp, “I think I need to go to the hospital.”
When my mother, home from the North Country, rushes me to the ER, they push my name above the boy with an eye patch, the woman lying listlessly on the tile floor. A nurse, a boy who looks not much older than me, avoids eye contact as he places the EKG pads beneath my sweat-lined sports bra. He apologizes, softly.
After about an hour of waiting, I prepare for the worst. Asthma? An allergy? Chronic heart disease? MS? Lupus? I imagine Susan, twenty years ago, a freshman in college, being rushed to the ER for her first infection, unaware that this would be the first of dozens accrued in her lifetime.
When a doctor finally enters, he looks at me with a tender, half-lipped smile.
“Everything came back normal,” he says. I stir in the gurney, unconvinced. “We think you had a panic attack, which can sometimes feel very serious.” I land heavy on the word feel.
When my mother and I leave the ER, handfuls of cheesy-looking mental health pamphlets in hand, all I can manage to say aloud is I’m sorry.
I read once that roaches can survive the apocalypse, remain immune even in the face of nuclear devastation.
I imagine words can withstand in this way, at least the sharp ones.
When I start therapy and begin to address my fixation with the body, I am confronted with a word steeped in lives. Hypochondriasis became somatization became illness anxiety, all in the matter of decades.
When I think of Susan’s decade-long Lupus misdiagnosis, I am reminded that what was once called hysteria became a woman with an illness.
When something is negative enough, it tends to shed its skin and leave it for something a bit softer, more palatable, until that, too, is tainted.
What creature, what idea can’t survive if given the option to evolve, to hide itself within another skin?
The Latin remissionem means several things: to send back, or to send away. To relax, or to diminish. To slacken, to let go of, to abate. To the onlooker, this looks like relief, maybe even progress. When I would see Susan’s body shake with laughter, or watch her attempt to go whitewater rafting, it seemed like nothing could possibly be wrong.
With hindsight, what once seemed like a lie was more like a play with many quick scenes.
Susan’s ‘remissions’ were not so much remissions but short performances of health.
In the last year of Susan’s life, remission meant she took me alone for weekends, something we hadn’t done much in the years before. She spoiled me with enchiladas and shopping sprees and movie dates. When she was too tired to move, we rested in her specially made bed as I watched Little Miss Sunshine over and over, the IV pole casting its ominous thin shadow in the corner.
When the time came for parents to drop their children off at university, she helped my mother move my sister and I into our college dorms. She left me with two gifts— an IKEA toolbox and a large batch of homemade cookies.
“These are all you will need to make new friends,” she winked, aware that my new cocktail of anxiety and panic diagnoses, after-school therapy, and a slew of meds had whittled my once-thriving social life down to a desolate pulp. If there were a possibility of panic, I stayed home, often missing periods of school, and most of my senior year activities. I ate healthy, exercised, and drank water. I took supplements.
Despite my efforts, nothing could convince me that my body wasn’t hiding something terminal. How do you trust a body when you’ve seen the capability of remission, the months of dormancy before the next bad thing?
In Latin, obsessios means a siege, an impasse. A constant, low-intensity conflict. I’m not quite sure how else to put to image what it means to be so aware of your own body, its instability in the world.
In January of my freshman year of college, Susan started flaring again, battling both lung and gastrointestinal snares. She was indignant. She arranged for my sisters and I to stay with her at a fancy hotel in Rochester, New York, near my sister and I’s school. She brought us to museums, took us out for expensive meals, told us she wanted to try all new things. We got our tarot cards read, jumped on trampolines, and spent our last night dancing around a butterfly garden.
Even with the excitement of adventure and a luxury hotel, the urgency and harshness with which she spoke scared me.
“I want to tell you what I think you need to work on the most,” Susan said abruptly while laying on the floor of the hotel room, my sisters and I each sitting on white throw pillows while hunched over bowls of takeout lo mein.
“And I want to tell you how I think you can get there.”
The next half hour, she talked without interruption. Holly needed to be less judgmental of people, to be more loving. Miranda needed to show that she could take care of herself so that other people don’t take the reigns in her life.
And I needed to stop being so afraid of everything, to stop taking things so close to heart.
A week later, Susan was hospitalized for the last time, having caught a bug from our hotel stay that a dance troupe had brought in with them.
Relapsus, Latin: to fall into a former state.
To slip away.
There are so many roots for death it astounds me. Dea, Old English, a total cessation of life. Dauthuz, proto-Germanic, ghosts. Doth, tod, daui, dauus.
An act, a process, a condition of the self.
I think about dying everyday. Not in a sense of wanting to, but instead imagining what the mind must do to prepare. Relax? Fight? Give up? Panic? While most people want their loved ones to die peacefully, I have to believe that not everyone does.
Recently, when I asked my mother what Susan was like in the hospital that last time, she told me that Susan was absolutely terrified to die.
My mother was told the real diagnosis just a few days before Susan’s death. Common variable immunodefiency (CVID). Lupus was always a symptom, never a cause. She was a walking, talking symptom.
At this point, never having been given the immunoglobulin treatments that CVID patients require, her lungs were so scarred that they began to develop mold and signs of lymphoma. Susan was determined to live, even though she would have to be on oxygen the rest of her life, and live in palliative care.
Despite her determination, Susan wrote, in excruciating detail and shaky script, her funeral plans and her will.
When I asked my mother if she had any hope, she looked out the window for a moment.
“There was just no chance.”
In my dreams, days after the funeral, Susan is hollow, faceless. A wordless chorus. This is what it looks like when an illness overtakes its host. Nothing but empty notes sprawled across a page.
Back at the apartment, I capture the cockroach between the mouth of an old sauce-crusted jar and a pamphlet from a neighborhood religious group, both thrown haphazardly in the recycling bin. As the roach and I flail together toward the bathroom, I cannot help but wonder how many roach-born pathologies have tainted my body without my knowledge, what vile things we now have in common.
While I watch the insect cycle the toilet bowl, all I can think about is its gut, the putrid collection it boasts between its limbs. I feel the familiar panic seep through my nerves, winding up my arms and into my throat.
It is a harrowing thing to be aware of the body within your body.
Every time I imagine my own body ending, it looks just like this scene: a cockroach, a toilet. A helpless thing, a spinning vacuum, some large figure looming overhead.
Yes, it’s just like this.
Limbs fighting against the air, convulsing all the way down.
grace (ge) gilbert’s recent poetics & lyric essays can/will be found in the Adroit Journal, Hobart, Ninth Letter, the Offing, the minnesota review, Gargoyle, DIALOGIST, the Penn Review, Maudlin House, and others. Her digital micro-chap, ‘no sharp things’ can be found in NAILED. She is an MFA candidate at the University of Pittsburgh where she consumes unholy amounts of cheese and dumplings. Peruse her work on her website– gracegegilbert.com.